CF Foundation Advocates “March on the Hill” to Attract Support from Members of Congress

March 14, 2012

On March 8, more than 40 Cystic Fibrosis Foundation volunteers from across the nation came together on Capitol Hill to speak out on behalf of their friends and family members with cystic fibrosis.

Led by National Advocacy co-chairs Amy and Peter Barry, the CF Foundation’s “March on the Hill” annual advocacy day included visits with 119 members of Congress representing 28 different states. During the meetings, CF advocates shared their personal stories and asked their representatives and senators to support rare disease expertise throughout the Food and Drug Administration’s approval process of new treatments for CF and other rare diseases.

CF advocate families the Bluesteins and Errardis meet with Rep. Joe Courtney (D-CT) (second from left) to share their personal CF stories and discuss the role of rare disease experts in the FDA’s drug review process.

To kick off the day, Foundation President and CEO Robert J. Beall, Ph.D., highlighted how advocates have helped to advance the search for a cure and the development of critical new therapies for those with CF. “By being here today on Capitol Hill, you ensure the voice of the CF community is heard in Congress,” Beall said. “Your work advocating on behalf of people with CF has helped make possible the tremendous advancements that are allowing people with CF to live longer, healthier lives.”

Congressional Cystic Fibrosis Caucus co-chairs Reps. Ed Markey (D-MA) and Cliff Stearns (R-FL) also thanked the volunteers for their efforts and discussed the importance of advocacy in gaining support for policies that help people with cystic fibrosis.

After a day of meetings, advocates attended a celebration dinner with Reps. Marino (R-PA) and John Fleming (R-LA) who shared their stories as a CF father and CF grandfather, respectively. In support of his daughter and all others with the disease, Marino committed to serving as a new co-chair of the Congressional CF Caucus.

“Our CF advocates and all people with CF are grateful to have gained a new champion in Congress,” said Foundation Executive Vice President and COO C. Richard Mattingly. “We are truly grateful for the support of Rep. Marino as we continue working to find a cure for this disease.”